Has anybody on neurontin to treat neuropathy pain noticed that it seems to stop working as well after a while? I'm on the max dose of neurontin and it doesn't seem to help the pain very much any more - not sure if it's the neuropathy getting worse, or the meds just aren't as effective after long term use. Just wondering about other people's experiences with long term neuropathy.

mnjodette

01-24-2007, 07:11 PM

Hi,Marycain. I've been on about 1800mg a day for a while (not sure if that's 'max' or not - seems like a lot.) I am experiencing some break through pain again. I'm working with a physical therapist who thinks some of my problem may be mechanical, but I'm not so sure. The numbness in my leg is actually worse. Anyway, I think you may be right - the medication isn't as effective after a while. I had absolutely NO break through pain for quite a while. Now it's back - not all the time, but frequently. What IS the maximum neurontin? Is it different for each of us?

Jody

MARYCAIN

01-24-2007, 07:39 PM

I'm on 2,400 in 4 doses a day, 600 mg. every six hours. As far as I know, it's been tested at higher doses (up to 3,600 mgs. per day), but the problem is that neurontin has a very limited bio-availability (the amount that actually gets into your system that your body can use). At higher doses, the stuff just doesn't get into your system enough to be useful. So in practical terms, there's a limit to how effective the drug is at higher doses. It's still working okay for me in controlling seizures, but in the last week or so, the neuropathy pain has gotten really bad again. My neuro wants me to have another set of EMGs and nerve conduction studies done, but I'm not too anxious to go through that again. At least it sounds like this may be just a problem with the meds losing their effectiveness, not the neuropathy getting worse.

mnjodette

01-24-2007, 08:12 PM

Yeah, I hear you about the EMGs. It's like the technician has license to play with a taser and needles, and you get to be the target. First EMG took nearly 2 hours; second about 90 minutes. Both were awful. Funny - the neurologist who came in to complete the EMG (an old guy - very well respected) breezed in the door and said "Well, my dear, what did you do to deserve the torture we have in store for you today?" I couldn't help but laugh. :lol:

MARYCAIN

01-24-2007, 08:41 PM

Yes, you would think with all the wonders of modern technology, they could invent a test that didn't hurt so dang much. I had the first EMGs done on both legs and arms the same day, and my neurologist then wanted a sural nerve biopsy done the same day. The day after the tests, I had so many bruises I looked like I'd been in a professional wrestling match. It would have been funny if it hadn't hurt so much.

homenow

01-25-2007, 04:32 AM

Oh, I can SO relate about that test!

They thought I might have myasthenia gravis, so they did the repeated shocks also.

Dreadful test!

They found one spot on my foot/leg that had no response at all. The doctor asked "Can't you FEEL that?" :shock: